That Little Darkroom

"Fear is that little darkroom where negatives are developed" - Michael Pritchard

Kellen may be afraid of scary movies, but I have a darkroom too. I don't visit it that often, but even though I don't open the door to the chilly room, it's drafts are still felt. They are there swirling below the surface as I live my life.

Here is the darkest of the dark: I have a fear that Kellen will pass away long before I am ready for him to go. I think because he was born with a heart defect, this fear was planted in me as an ugly seed at his birth. I was confronted with the reality that he might not make it out of the hospital. Even though he had a surgery at six months old to repair his heart, the seed of this fear was still placed in the ground with the soil tamped firmly around it.

Every time I hear that a child with Down syndrome has passed away, the fear that I feel is magnified. I can even be driving to work and start thinking, what if...? My mind will start picturing, or worse yet, planning, his memorial service and I'll start crying. I don't talk about this with other parents, but I have a good feeling that I am not the only one with this fear in her darkroom.

Another fear that I experience is that Kellen will be disrespected and mistreated when there won't be someone there to advocate for him. This is a fear that I know has come to pass more than a few times already. I am scared that it will happen so many times, or so severely, that he will lose his spirit and become depressed and anxious. That he will just shut-down, give up and decide that it's no use trying-- trying to communicate, trying to interact, trying to determine the course of his own life...

There are things in this life that I value deeply: freedom, empowerment, self-expression. I am afraid that he won't be given a chance to experience that which I hold dearly.

"I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain" Dune